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23 February 2011

Aidan got sick last week and had to be put on a pretty potent antibiotic. We didn't even finish the course because it tore her insides up. It gave her diarrhea and caused her to vomit one night while in bed. Two days after I stopped the medication she came home from school saying her bladder hurt. After figuring out she had a UTI from the heavy antibiotic use, I knew I needed to take her to the pediatrician. It was late Friday afternoon and Rylie and I were literally on our way out of town for a volleyball tourney. We took the first appointment we could.

Wouldn't you know it, we lucked out and got the pediatrician I never cared to see again. The one who said I shouldn't worry about Liam gaining weight (back when he was ONE and hadn't gained weight in months) because he'd be in a wheelchair all of his life anyway. The one who said I wouldn't want to have to lift and carry a heavy child anyway. The Dr. with no filter. No tact.

Aidan's appointment turned into a Q & A on Liam.

I know he was curious about Liam since he used to be Liam's primary pediatrician and we haven't seen him in well over a year. He asked me how Liam was doing. I told him that Liam was doing ok. But that intellectually he is starting to progress...he knows his colors, is learning numbers, letters, etc... I told him that Liam had made good progress after his last round of oxygen treatments. He asked if Liam was a part of a study so that my statements could be evaluated and used to prove that he had actually made progress from the hbot. I told him I wasn't but that there were a lot of studies showing that hbot lessons disabilities of all sorts. An I'm not going to lie about my son's progress. What would that gain me? And that's when he lost his filter again.

He said he was just blown away that a kid like Liam could learn his colors and letters. And he would never have approved Liam to get hbot in the first place.

And that is where I got mad. Not just for Liam, but for all kids with disabilities who are written off by Dr's before they are ever given a chance.

I am glad I got to see him if only to open his mind to the reality that not everyone fits in a medical box. Not every kid responds to treatments the same. I doubt I did because this Dr already knows everything (Aidan's UTI was doubtfully from the antibiotic, he says) and has convinced himself of his wisdom.

While Liam may be very, very challenged by his cerebral palsy, he deserves (and now has) a Dr. who is going to root him on and give him every opportunity to grow and mature without shutting him down before even giving him a shot. One who will believe in the child, not the disability.

20 February 2011

In case I haven't made it obvious beforehand with all the talk of stem cells and the latest news and articles about stem cell therapies, we are planning on taking Liam for treatments just as soon as we can! While stem cells are the future here and it will be done eventually in the US, we do not want to wait for Liam to get older and his disabilities even harder to overcome. We want to help him now, while he is still young and has the best chances to improve. Because insurance doesn't cover stem cells we have to do fundraising for Liam in order to make this happen for him. Depending on where you go, China ($30,000), Germany ($17000), or Mexico ($9000) it's going to be pricey. We are planning on going to either the Dominican Republic or Mexico. They are both about the same price. Again, either way, we have to raise the money in order to make this happen for Liam! While I am very nervous about asking for help, I know I couldn't live with myself without trying. Liam deserves a mom who is willing to step out of her comfort zone and try to make this happen for him. So, that's what I'm doing!

For those of you who haven't friended me on facebook or aren't even on there, I wanted to let you know what we have going on over there! We've set up a page for Liam called Limitless{Team Liam}. Why Limitless? You can see why in the design of the tees! Why Team Liam? Because I mean it when I say we can't do this without the support of our friends and family! We can't make this trip a possibility for him without all of you. And because I've shared so much of my struggles and journeys with Liam through this blog, Liam's "team" of followers are all a part of this even if we haven't friended each other on facebook. It's got to be a team effort if it's going to happen.

So what does the facebook page have on it? Well, if you aren't on facebook here's what we have going on.

1) We have tees!

100% cotton tees in sizes small to 3X. White with black lettering. Sizes small to XL are $17.00. 2X and 3X are $18.50. All shirt orders will come to me. If you'd like, I can mail them to you for $4.00. It's the same price to ship 1 or 5!

The shirt design is already at the printers! They are just waiting for us to get a large enough order in before they start. Once the order is placed it will take about 3 weeks to get them in. So I need ya'll to order soon! We already have several orders placed.

Just click on the picture to see it larger.

2) We have flower bulbs! Dutch flower bulbs that are 100% guaranteed. This is from a company that does fundraisers for people in need and they give back 50% of every order purchased directly to Liam. The bulbs will be sent to me and you can pick them up from me or I can send them to you for $4. Bulb orders can be placed all the way through April!

3) We have just your flat our handy dandy paypal donation button if you don't want any goodies and just want to donate. If everyone who reads this blog donated just $5 (the price of a Starbucks coffee) we could be there soon getting Liam treatment!

If you'd like to head over to facebook and friend me, please feel free to do so. If you'd like to just see our page for Liam, check out Limitless here. You'll be able to see the tees, the flowers, and a drop down menu to make it easier for ordering.

If you aren't on facebook and want to place an order, you can just go to the link in the top right hand side of this blog. It will take you to Liam's paypal donation site and allow you to order tees, bulbs or just donate. Just make sure you specify what you are ordering and if I need to send them to you or someone else!

Please pass along Liam's page or blog to anyone and everyone who you think might want to help out. Please tell them that the money isn't going for my nails, my hair, or a daily Starbucks coffee. It's not going for luxurious splurges. It's going for the medical expenses of a little guy who fought the odds and survived only to face the cruel reality of severe cp and cvi, cerebellum atrophy and ataxia, reflux and failure to thrive. And it's going to a family that holds out hope that in God's limitless mercy and grace, we would see improvements in Liam through the use of his own stem cells as a treatment for cp.

16 February 2011

I used to have a large group of social circles that I regularly interacted with; friends, homeschool groups, church groups, work groups, parents of my kids friends, etc...

But after having Liam my circle of involvement and social groups have either fallen to a bare minimum or fallen away entirely. People have disappeared from my life. Friends I used to have dinner with are gone. It's unfortunate to lose important supportive friendship ties. My social interaction is now with therapists, teachers, and Facebook. And the once well-visited social circles are a construct that is now very foreign to me.

I have had to reconcile to myself the fact that this life is not my own. I always knew it wasn't. But it's a very hard thing to do when you have the illusion of control for so many years and then it becomes certain that you never had it to begin with. It isn't something that I have done grudgingly. On the contrary. While I very much miss the life I used to have; the freedoms, the money, the friends... I have found a joy in places that most people will never know; watching my multiply-disabled son smile when I enter the room (even though he doesn't really see), rejoicing over every little step he makes in his progress (each micro step is a giant leap for him), and the love his brother and sisters share with him as he delights in their attention (their view of people with disabilities has broadened their hearts and minds).

It has not been easy these last 3 years. It just hasn't. I struggle with how best I am to be a light in a dark world when I feel like my own world is very dark. I am in a transition phase with my faith that has taught me that even though I can step away from God, he has not walked away from me. I am at a crossroads where I do not know how to be the best me I can be. My old self is so familiar and the skin I wore so comfortable. And I have been put in a place where I do not know the new me very well at all. On any given day my emotions run full tilt in opposing directions. I am faced with situations that I don't want to be in. I imagine it is a lot like how Moses felt. He was put in a position that he did not feel comfortable with and did not feel capable of doing. He argued with God about whether he had picked the right person for the job. And I most certainly feel the same way. I think it everyday. And I sit, day after day, wondering how my light will shine when my social construct has been destroyed. I am unable to go into all the world.

Why put me in a position where I have no visual sphere of impact void of my family?

The internet has surely helped lesson the isolation families such as mine have experienced. I am saddened when I think of all the families that came before the dawn of texting, email, Facebook, and twitter. Even in my isolation I know that I have it better than the families before. I am able to reach out to other moms online who have children with special needs. And not just children with cp. I can relate to any mom with a child with special needs because I can empathize with them. What every parent experiences is the same range of emotions. Anger. Denial. Frustration. Grief.

I remind myself that my job is not to worry about where I go, who I see or who sees me. My job is not to worry about the money, the needs, or the wants. My job is to trust that I am where I am supposed to be. And that God will use me if and when he sees fit. How do I be a light when I am stuck at home? How do I go into the world and show the gospel? I don't know yet. But I do know that I have met more people online through Liam's journey than I ever thought possible. God had taken us to places I never would have been with out having a special needs child. Not just physically but emotionally as well. Although my social circles have shrank to a bare minimum, who knows how and in what way I can be used.

* You don't have to disappear from the lives of a family with a special needs child. See what way you can help. Even if it's just coming over for an afternoon tea. They still need social interaction. Empathize, realize that they have a new normal, be a shoulder to lean on. Ask questions. Educate yourself. But most of all, don't just disappear.

14 February 2011

Liam moves. A lot. But he doesn't move with purpose. He just can't coordinate and get his body to do what should just come naturally. He can roll, but not well and he can walk with support, but not well. Especially since he has no head/trunk control.

One of his PT's this week set him on a scooter board to see what he would do because he loves to kick his legs.

04 February 2011

We finally had an appointment with Dr. Kid this week*. We haven't seen her since October so a lot has transpired for Liam since then. He's had a visit with an old school neuro, a Russian endocrinologist, and one gung-ho high calorie GI NP.

We had a lot to catch up on!

I told her all about how the neuro appointment went and asked her if maybe we could find someone else who would take Liam seriously as a patient and not a number. She thought that would be a great idea especially since Duke is doing cord blood stem cells for kids with CP. I hadn't thought of that. We always get shuttled to Chapel Hill for everything so Duke just never entered my mind. And Dr. Kid is all for us doing stem cells. I talked with her frankly about our options, where we want to go and what it entails and she said to go for it. She's frustrated with how politics has taken over and ruined what stem cells mean (most people think embryonic) and she understands why we want and need to leave the country. She can't wait for the day that it's being done her in our country.

We discussed the findings from the endocrinologist and while she had never heard of the endocrinologist we went to nor how we ended up with that particular one, she suggested seeing another endocrinologist at Duke. I told her I didn't want to waste another full day of driving just to be told the same thing; that Liam doesn't need any help with growth. She understood and asked me if I wouldn't mind her emailing him for us. Absolutely not. Email away! If he is of another opinion, I'd be glad to hear it. I just don't want to drive hundreds of miles to be told the same thing.

We also talked about another round of HBOT. She was all for that as well. Until she heard where I wanted to go. Because the Dr. there has never treated kids with CP, she was unwilling to write a new RX for it. She said if I wanted to go anywhere else she would write a new one right then and there, but because this Dr. doesn't treat kids, she did not feel she could comfortably write the RX. I completely understand that. I did explain that a chamber is a chamber and it doesn't matter if it's a kid or an adult in there, the chamber operates the same. She told me to give her Dr. O2's number and she would personally talk to him about it. If after talking to him she felt comfortable, then she would go ahead and write a new RX.

I love Dr. Kid. She spent 45 minutes with us at the appointment just talking to us over everything, working out the next steps and taking the initiative to make those things happen for Liam. It's awesome to know that out of all the Dr.s we have seen, at least one of 'ems got his back.

01 February 2011

Nothing makes me feel more deficient in my God given roll as a mom than parenting a child with significant disabilities. I wake up every day and feel unequipped to do this job. I wake up and a battle rages in my mind. Lines are drawn. One side is warring that I can not manage to possibly do this job in anyway that will not render my child broken and incapable, to the other faction warring that God chose Liam for me and he evidently thinks I won't screw this up too badly.

Ahem.

Mother Teresa's quote is nice and all. You know the one: "God doesn't give you more than you can handle, I just wish he didn't trust me so much?" But I hate this quote. Really, I do. Sorry Ms. Teresa, but it gets overused and abused by trying to comfort those who are going through tough times.

God does give us more than we can handle. All the time. It's no accident that he pushes our limits of what we think we can handle. In the bible Paul was put through numerous situations that would make the best of us wither and give up. Paul boasts on how weak he was while enduring through beatings, stonings, thieves, being shipwrecked, etc... all the while God was giving him more than a human could handle yet lifting him up with his mercy and grace (oxymoronic if you aren't a Christian, I know).

I know I don't want to wear the badge that says 'You've buried two children and didn't go crazy. I trust you! -God'

Could you imagine that kind of pressure? It's enough to kill you! God gives us a lot to deal with at times and some of it is pretty ugly. Really ugly. But he promises never to leave us.

The bible tells us we are to rely on God to give us the strength. We are to let him carry our burdens. We are not to handle it all ourselves. And each day I wake up, war within myself, and then give it all to God because he will equip me. One day at a time.

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This blog has journaled the fallout of giving birth to a micropreemie & how it's affected everything in our life from marriage & family, to friends & church & beyond. Liam's early arrival gave him a list of diagnoses like CP, CVI, & ROP. His most impacting special needs are his mixed tone ataxic/athetoid-like cerebral palsy & vision issues. He's non-verbal but teaches us all. Follow along as we try to live this crazy normal, knowing God is the author and he isn't finished writing this story.